Playing the Hand She’s Dealt

By Ellen Fortini

Early one morning in November 2010, Aimee Osgood went to get her children up for school when she slipped on her bedroom floor. As she landed, a screw on her bedframe sliced her arm wide open. She had been experiencing imbalance, but it was the severity of cut that gave her pause and made her realize something bigger may be going on. As she recalled, nothing had caused her to fall – no slippery socks or discarded toys. She just fell.

“I was getting vertigo and a lot of falling down,” Aimee says. “I had no idea what was going on, so I went to some doctors’ appointments and had lots of lab work.” The blood tests revealed “a whole lot of nothingness,” so she requested to see an ENT (ear, nose, and throat doctor). Aimee thought she had an ear infection, but the ENT doctor ordered a CT scan. “Then I got a phone call saying, ‘You need an MRI right now.’”

The MRI revealed a brain tumor. Actually, 11 brain tumors, the largest being a 3.5-centimeter acoustic neuroma, which develop on the hearing and balance nerves that lead from the inner ear to the brain. “When they did the biopsy,” Aimee says, “it tested positive for neurofibromatosis type 2 (NF2), which are tumors that gradually grow on cranial and spinal nerves your whole life. There is no cure for it.”

Though the tumors are benign, they are still life-threatening. At the time of her diagnosis, Aimee was 33, had two young daughters, and had just been accepted to nursing school. “No one in my family ever had anything like this before,” she says. “We didn’t know anything about it. My first surgery took fourteen-and-a-half hours and was right before nursing school,” the Port Huron, Michigan, resident says. “Another surgery was during nursing school, and one was right after. I had a break for a couple years, then I had two surgeries last year.” She says completing nursing school while managing the surgeries has been among her greatest successes.

The first tumor removed was the acoustic neuroma, which was pressing on the pons. The tumor was so large, it compressed Aimee’s brain stem and impeded the cerebral spinal fluid, which had backed up into her head, causing increased intercranial pressure and resulting in papilledema, the swelling of the eyeballs and eye nerves. “It was just very painful. It felt like constant dry eyes and like my eyeballs were going to pop out of my head. It was pressing on my spinal cord and it can cause issues with breathing.”

So far, five tumors have been removed, and six that are each two centimeters or larger remain. Two are on each trigeminal nerve, and Aimee has been advised that removing them would result in more cons than pros, as she would be left with deficits that would lead to additional issues. “For right now, we’re doing a watch and wait,” she says. “They said they can’t take out more than one at a time because they’d have to open up a bigger spot, and exposing the brain to that much air is not a good thing.” Aimee travels two-and-a-half hours to the University of Michigan for her surgeries and doctors’ appointments, including neck and spinal MRIs that often last up to three hours at a time.

At the time of the interview, Aimee was preparing for a three-hour brain and spinal MRI the following day. “I have a bad boy tangled up in my venous structure on the occipital lobe, causing massive migraines,” she said. “They want to see if it is ready to be taken out.”

In the past, tumor removal has relieved some of her pain. “The headaches tend to go away for a while, and my balance gets better for a little while,” she says. “But they said that because I’ve had [the tumors] since I was born, my body compensated well because it was something that gradually grew over time, and my other balance nerve was able to take over.”

Additionally, the last two tumors removed resulted in Aimee gaining almost six centimeters of space in her head. “Back to where [my brain] should have been in the first place,” she notes. “Hopefully, it stays there and nothing else grows.”

“The tumors typically grow a millimeter a year,” Aimee explains, adding that the 35-millimeter tumor correlated almost exactly to the predicted growth timeline as she was nearly 34 years old at the time it was discovered. “They can grow anywhere along the nerves and in the brain. Mostly meningiomas. They can be pretty devastating, as they can take your hearing, balance, vision, ability to talk, swallow, and walk. I have deficits on left side. It’s weaker, and when I am tired, my family notices a bit of drooping on the left side of my face.”

In addition to her migraines, which tend to last for days, Aimee is deaf in her left ear with constant tinnitus, has trouble with word retrieval, and deals with balance and vision issues on a daily basis. She says being deaf and working in a busy hospital has been among her biggest challenges.

Aimee married her husband, Richard Osgood, in 2018, eight years after her initial diagnosis. “Sometimes it pays to swipe right,” she laughs. “He is supportive, and he’s had back surgeries and spinal issues of his own, so he understands what it’s like to have pain, but nobody believes you. If I’m not feeling well, he’ll ask what I need, like an ice pack or something to drink, he’ll help me with my medicine, or recommend we take a walk.” Her daughters, Brooke, 17, and Olivia, 13, stepson Camden, 14, and stepdaughter Tesla, 11, all help when Aimee needs a break or some assistance, and the kids even got to help style Aimee’s new hairdo when she decided to shave her head for her two surgeries last year.

“I let them do a mohawk,” she confides. Aimee says she was known since her school days for having long, curly hair, so cutting it was not a decision she took lightly. Nor was it required for the surgery. “[The surgeons] usually just cut a strip of hair where they need to make the incision,” she says, adding that the gel used during surgery to keep her hair in place often resulted in her long locks becoming matted and her needing assistance to wash it. So, with two surgeries on the horizon, on one side of her head in May and on the other side in October, Aimee’s sense of efficiency prevailed, as did her adventurous nature. “It was just easier for the kids to shave it into a mohawk, so I gave them the scissors and razors and told them to go for it.”

The close-knit family keeps active despite busy work and school schedules. “Yesterday was the first time in years I tried roller skating and I didn’t even fall,” Aimee says. “I went down the street and back. I was a little off-balance, so my arms were flying all over, and I am sure the neighbors were all laughing at me, but I was very proud that I was able to do that. I also have a bike, so I am riding again and I try do a lot of walking. I want to stay active because as I get older, my balance is going to get worse with age anyway, so I try to keep moving.”

Her active lifestyle contributes to strangers’ frequent disbelief of her diagnosis. In fact, in the early days of the pandemic, Aimee was at work when the left side of her face began to droop. Colleagues were concerned she was exhibiting signs of a stroke, but she knew it was her facial nerves and an issue related to her upcoming surgery. The ER doctor on duty at her workplace was not familiar with her or her medical history and was convinced she was exaggerating. “He snapped his fingers in my ear and said, ‘You can’t hear this?’” His unkind assumption aside, the doctor ordered an MRI and the results prompted Aimee to be sent immediately to the University of Michigan to be seen by her regular doctor in advance of her surgery.

“A lot of people don’t believe I am deaf and I have NF2 because I move,” she confides. “Most people don’t believe I have something wrong. They say that I am way too active, or I don’t present like what people think of as a typical brain-injury patient.”

Aimee works as a nurse at a metro Detroit-area hospital, on the telemetry floor. Since the pandemic, the unit has been changed to monitor up to 40 COVID patients at a time, many of whom arrive with grave symptoms, but some also with newly-acquired head injuries resulting from falls due to weakness and oxygen-depletion brought on by COVID. As a COVID nurse who has also faced her own challenges with brain illness, Aimee is often called on by colleagues to share first-hand about the challenges her patients may face.

“When I go to work, they give me a lot of the patients that have cranial and spinal issues,” she says. “Because sometimes when they start to feel really down or they feel like they have no hope, they give me those patients so I will sit and talk to them.” What she offers is comforting insight and understanding as well as practical suggestions.

“A lot of them say, ‘You have such a positive outlook, I never thought of it like that,’” she says. “Most people hear the diagnosis ‘You have a brain tumor,’ and they just shut down. At the very beginning, I did, too, because you hear that, and you don’t know what to think. After 10 years of reflection, I am able to give my perspective and my experiences and help other people. I help my patients learn how to cope, how to deal things to help them get through it.”

What are Aimee’s best tips for her patients?

Get a nightlight. “If your balance is off, and your body has no idea what’s going on, you’re going to fall, so your vision starts to take over and helps with your balance.”

Buy a hat. “When you have brain surgery and they shave part of your head. They replace it with a metal plate, so on a cold, windy day, you get instant brain freeze. So, I tell them, ‘Go hat shopping!’”

Don’t get frustrated. “A lot of times, I lose my words because I’ve had a couple surgeries right on the word-retrieval section of my brain. I always feel like the word is on the tip of my tongue, but it takes longer to remember what it is. So, I try to calm down and just give it an extra second.”

Her advice isn’t just for her patients, though. Aimee’s positive attitude is thanks, in part, to a simple habit that she encourages anyone to add to their daily routine. “I tell a lot of people to just find the funny in every day,” she says. “I always follow it up with: ‘Yes, there are days when you’re going to want to sit in a corner and throw forks at everybody, and you’re allowed to have those days, but you can’t turn it into a daily thing.’ Find the funny, or it’s going to consume you – the bad vibes or the bad moods.”

That is expert insight from someone whose diagnosis came at a most inopportune time and used what it taught her about own strength to propel her through nursing school. “Just because you get bad news, that doesn’t mean it’s the end of it,” Aimee says. “You can keep going and work through it. Because if not, I wouldn’t have continued with nursing school.”

“Healthcare workers who understand both worlds – the demands of medicine and what it’s like to be a patient facing a diagnosis with very unknown consequences – are the angels that walk among us,” says Carrie Collins-Fadell, MPA, Executive Director of the Brain Injury Alliance of Arizona, and Aimee’s high school classmate. “As Aimee has experienced both sides of the patient/healthcare-provider dynamic, what we all can learn from her is a gift. Aimee is a true warrior.”

Part of what keeps Aimee in fighting shape is her own recovery regimen. She says recoveries from her type of brain surgery usually last four to six months. “But I can do it in four to six weeks,” she says. “My longest was eight weeks. I usually try to push myself to get back into doing stuff. I like to keep busy.” Her recipe for success starts with a week of “vegging” – just relaxing, not pushing herself, and taking it slow. “Then I add in a walk, and picking stuff up around the house, then folding clothes, and add to it every day. I like to keep pushing myself. Even my doctors say they can’t believe I do so much in such a short amount of time.” And that includes her time in the hospital. “When I go to surgery, I am there one night, and I go home the next morning. I’ll know the signs and symptoms if I get sick, or if something is wrong, so I go home the next day.”

Aimee comes by her independence, drive, and determination honestly. Her grandmother will turn 100 in June, and, until a few months ago, she lived by herself in the same house she lived in since 1954. Aimee says she and her family had to convince her grandmother to move into a retirement community. “She couldn’t go up and down the stairs anymore,” Aimee says. “She fought it, too. And it’s not assisted living, it’s a retirement community, so she has her own apartment. She does everything herself.”

Proving that the apple doesn’t fall far from the tree, Aimee has her own reasons to continue the family legacy of being a strong role model. “I push through it. I have young kids. I just can’t sit in a corner,” she says. “There are days that I want to sit in a corner and scream and throw forks at people, but I can’t do it every day. I can’t let this disease take me. I am too young to give up. I’ve still got things I want to do. I have things I have to do. I’ve got obligations. I owe it to my kids to be here for them.”

In her role as a healthcare professional, Aimee has additional reasons for persevering. “I like to get the word out about brain issues because a lot of people don’t like to talk about it. But a lot of research needs to be done, especially with NF, because there is no cure. My family knows that when my time comes, I’m donating my brain to research because this disease is terrible and some people have it worse than I do. We don’t need to research just the big-name diseases, there are a lot of other things that are out there, too, these oddball diseases.”

Thinking of others, even future generations, is a consistent theme in Aimee’s family life and her professional world. Taking time for herself and being realistic about her needs are essential tools in helping her give back most effectively, which is a life lesson anyone can relate to.

“My grandfather always used to say, ‘Play the hand you were dealt.’ What was given to you, the situation you are in, that’s what you’ve got to deal with, and you’ve got to find your way through it,” she says. “If you were dealt lemons for the day, you’ve got to deal with the lemons. So do something with them.”

In playing the hand she was dealt, Aimee Osgood is winning the round by staying active, finding the funny, and encouraging others through her wise insight. Her patients and her family get to see what happens when you truly make the best of each day.

“I’m still here. I can walk,” she says, cheerfully. “And I can roller skate.”

Ellen Fortini is a globe-trotting writer and editor who currently lives in fabulous Las Vegas, Nevada.